Category Archives: autism

I can’t say there was ever a moment over these last eighteen years where I was absolutely sure my spectrum kiddo would go to college.

We were not that kid.

I can remember last week, before school actually began, when we went to the disability office and I had a mom-moment of panic and I wanted to ask the director if I was delusional to think we were ready for this. I was very concerned that I was overestimating our abilities and setting him up for failure.

What I’ve realized this last week as I’ve watched him successfully and imperfectly navigate his first week of life on a CSU campus is that sometimes the well intended parents we are need to step out of our kids way. We need to TRY to stop fretting and rounding everything off to the nearest disaster and let the children be themselves….imperfectly perfect.

No, it’s not a slam dunk.

Yes, there will be moments of struggle. We are not perfect. He still has communication struggles. He still has organizational struggles. That’s just us. He is a work in progress….as am I. He will make mistakes and that’s okay because that’s part of life for all of us. This week I remembered that parents need to take a deep breath, loosen up those apron strings and let the kiddos blossom into the adults they are meant to be….with flaws and imperfections like we all have…and keep on breathing. The ‘keep on breathing’ part is the hardest part ❤️

I won’t candy coat anything and tell you the road isn’t long, hard and weary. It is.

And I won’t tell you it’s easy to be the bad guy against the school district every year because it isn’t…..but I promise you it’s worth every struggle, every fight and all the hard work pays off on that one day when you get to watch your spectrum kiddo defy the odds against him when he walks onto his college campus alone on that first day of his freshman year in college ❤️

By now you’d think I’d be able to see these things coming. You would think, after sixteen years, the gobsmacking would not still take me by absolute surprise and leave me speechless. You would think this would be the case but…NOPE.

I will tell you that as of Monday, when your spectrum kiddo begins to speak of Shakespeare and Macbeth, it becomes something similar to a freeze frame moment where the mom’s brain freezes into a slow motion thing and then it takes a while for everything to really sink in. It’s been sinking in since Monday…. ever since my sophomore-in-high-school, regular-ed-classes-with-NO-assistance-spectrum-kiddo and I had this conversation on the way to school on Monday….

Me: So what do you have going on today? Tests? Quizzes? Anything special?

Him: Nothing really that I can think of.

Me: Okay.

Him: Oh wait. Did I tell you what happened in English?

Me: No.

Him: On Friday my teacher told me I got the highest test on the Macbeth final.

Me: Wow? Really?

Him: Yeah, I got the highest grade in A-L-L of her classes.

I. Kid. You. Not.

And this is where mom goes into that gobsmacking, freeze frame, s-l-o-w motion, speechless, jaw hanging open kind of moment. And, yes, after sixteen years you’d think I’d be better at this and it would not take me by absolute surprise and leave me gobsmacked but….M-a-c-b-e-t-h and S-h-a-k-e-s-p-e-a-r-e with thee and thy and thou and inferences and hidden meanings all mixed with autism and speech processing delays and a boy who has always held a general dislike of books. Because we’re still trying to master new English and this is Olde English. And this is the same boy who does not do chapter books with characters and emotions, developing plots and keeping track of events. This is the boy who only started reading library books in fourth grade when he discovered the scientific reference book section with books about spiders and reptiles. Did I mention this is the same kiddo who had a “C”in English just a month or so back? Yeah, same kiddo. So, of course, G-O-B-S-M-A-C-K-E-D, slow motion, freeze frame moment for the mom.

Me: W-O-W buddy. That’s awesome.

Him: Yeah, but I’m not sure I made an A.

Me: Really? I bet you made an A.

Him: Maybe everyone else just did bad?

Me: I don’t think so, buddy. I bet you made an A.

Let that sink in, my friends.

ALWAYS. ASSUME. COMPETENCE .

And, turns out, when I picked him up yesterday he let me know he DID indeed get an A on the Macbeth final. Turns out the rest of the class did not do bad :). He just happened to do VERY well and when I contacted his teacher she tells me it was an extremely challenging final that required a high level of recall and analysis and the spectrum kiddo set the grading curve for ALL of her classes.

Yeah, that’s an unexpected and delightful moment. I’m also even more convinced than ever that different is not less.

Once upon a time, when my boy was eight (he’s sixteen now), I was in the middle of trying to arrange an evaluation for my boy and, being the new girl in California that I was and not knowing who to call, I just started dialing numbers to children’s hospitals. I first made contact with a lot of people who answered phones but did not work with children. But on this one fluke of a call, I made contact with a REAL doctor….I know, I know….a doctor answered his own phone! No secretary, no scheduler, no front man/woman. I simply dialed from my kitchen table, the phone rang in his office in the hospital and he did this crazy thing….he picked up his own phone.

When he answered his hospital phone, I asked for the doctor by name (and for the life of me, I cannot remember his name) and he said it was him. I asked if he did evaluations. He said that the hospital no longer did developmental evals for autism. I was polite and kind and thanked him for his time and I think he must have sensed my sadness and frustration because he kept talking. This doctor began to share with me his thoughts on how, from all he’d researched, he saw autism was a genetic issue. He said we all have markers for autism.

All. Of. Us.

Yep, you and me and everyone else. He said we all have a few minor markers and we just learn how to compensate for the few markers we have. He said what happens with autism is the genetics of the mom and dad, and all their genetic history combined, will amass a multitude of markers in some kiddos. According to him, what happens to some kiddos is they get more markers than they can process. Where one or two of us might have a few quirks, some kiddos get a lot of quirks and it’s hard for them to process so many quirks.

Anyway, I have a hard time explaining it was well as he did but that simple explanation has always made a lot of sense to me. Over the last decade plus when the world at large wanted to point fingers at refrigerator moms or broccoli or vaccines or the flu or induced births or older dads or pain meds during childbirth or the color of the sky, this theory and his words made a whole lot more sense to me.

It’s genetic.

Sweet parents, hear me when I say this…..autism is NOT your fault. You didn’t do anything to cause your child’s autism. The truth is there should never again be any flashy, headline stealing so-called cures or blame on this spectrum. There are no cures for autism because nothing is broken…not you and not your child. No one is wrong or bad or neglectful, my friends. Not you or anyone else.

You are good parents,

you are great people and

you have a beautiful child who can’t wait to conquer this world…one day at a time with you right by their side acting as their guide and advocate when needed.

So, let go of your guilt and the weight of the world that you heap upon your own shoulders, Sparkle moms and dads, and just get on with being the parent and champion your child needs you to be because that is the thing that really matters and will make all the difference on this spectrum journey.

There are moments in this life when we all need to take a step back, take a deep breath and be the calm in the room. There are moments when we all need to stop being offended and taking our frustrations out on others. There are moments when we need to stand down and realize not every moment is a grizzly moment. I get all of this and I have spent my adult years reminding myself of this more than I’d care to admit.

That said, there are also those very pivotal moments when we, as parents, need to stand up, to grizzly up, and to step forward in order to effectively advocate for our children.

My best Conversation to date with a school administrator:

Following a two hour melt down where my son was under the desk screaming and the class had to be evacuated. After two hours of the school floundering as they attempted to resolve the situation, I was called and asked to step in. It took me all of three minutes to do the resolving. After the situation was resolved, the principal asked me back to his office for a chat. It went like this….

School Admin:
“I am concerned that your son’s behaviors are impacting the instructional minutes of our other students in his class and I will not stand for instructional minutes to be sacrificed.”

Me:
“I am equally concerned that every time his teacher fails to stand up and manage his behaviors you and she, as a team, sacrifice his ability to be viewed as just another kid in his classroom. Every single time you allow a frustrating moment to deteriorate into a melt down, HIS instructional minutes are not only impacted, but HIS social opportunities with HIS peers are LOST.

You are allowing a teacher’s inability to STEP UP to compromise his ability to simply be seen as a kid, a regular kid, and you are, instead, allowing him to be seen as chaotic and frightening every time she misses the cues because, for some entitled reason, she doesn’t think kids LIKE HIM are HER job.

Every single time she fails to do her job she takes a little piece of his childhood away from him.”

A Wonder Soul asked this last week about my kiddo and whether he had been diagnosed as severe early on. It’s a question that’s been trailing me all week. Back in the diagnosis days fifteen years ago, it wasn’t always a helpful process and doctors weren’t always very open or hopeful with the parents. I don’t ever remember hearing a functioning level discussed. One might think that because my son is successful in high school today (at 16) and is independent in his academics that it has always been that way. It has NOT. There were days when his behaviors nearly eclipsed his academics and put educational choices out of our hands.

What I do remember is him not being accepted into the same”typical” preschools his siblings attended because of his volatile behavior, his lack of speech, the fact that he was still in diapers at four, and because the preschool administrator looked at me like I had a third eye when I mentioned he was autistic. What I do remember is being in the special ed classes in preschool through our local elementary school. What I do remember is wanting my boy to be recommended for the combo kindergarten class Florida offered where two teachers (one sped and one reg ed teacher) team taught a class that was mixed with regular ed and SPED students….t-o-g-e-t-h-e-r. Yeah, we wanted to be part of that.

I remember the crushing feeling when I heard we would not be recommended for that class and, instead, would be placed into a isolated special day class for kids with varying disabilities.I remember the first day of that class. I remember walking in and knowing that class was not the right placement for us ….not because I didn’t want him with other kids like him but I knew, from the way the class was set up with toys and fun zones, that once he got used to playing all day, we’d never get him to buckle down and do academics again because playing on the computer and in the kitchen area is a lot more fun and behaviors would escalate further to get back to the fun zones he wanted.

That’s when I went back to the team and the teacher and I pleaded and I promised and I pledged all my time to them to help make up for the time my boy would take away from their other students. I also recognized that there was a chance I was in denial and the new placement wouldn’t work so I asked them to give us just three months. I promised after three months if it was not a good fit, I would be the first one to remove him.

I tell people often that that one decision changed everything. It was the difference between my son sinking and swimming academically. It was a risk and I understand they had never taken such risks before but, that day, they did and they gave my son the chance to rise up to the expectations set before him. To this day, those two teachers and the two aides in the class, to me, are the Godsends that changed the direction of our lives forever. Nicole and Kim (last names not used because I do not know if they would want them used publicly) were, and are still, the magic in our memories and I’m thankful every day for the risk they all took for my boy.

I promise you it was not a simple or easy year.

Progress was not magic.

My boy was not always kind and did not make great choices.

He challenged them every single day but they did not give up. No matter how much he screamed in opposition, no matter how much he snotted on their clothes, no matter how much he tried to manipulate to get what he wanted…..they never gave up on him.

Later that year, when it was time for our IEP meeting in prep for first grade the first words I heard out of our team was, “We’re sorry.” Their response was stunning and, to this day, I still marvel at it. Their honesty, their transparency and their genuine love of their students is something all teams should aspire to.

A stunned me asked an obvious, “Why?”

As they spoke, I heard these words, “We’re sorry. We thought we understood your son’s educational level. We thought we knew how far he could go but we were wrong. We were all wrong. Your son is a red flag to us that there is a lot we don’t know and we shouldn’t assume we understand a child’s potential just because we know his current functioning levels.”

And like I said before, I’m not sure if my son was considered “severe” back in those early days but he was challenged enough not to be seen as a candidate for classes with his typical peers. What I do know now, with certainty, is where he is today because of the risks and challenges that were taken.

Lesson #1: Don’t be the a-s-s in the word a-s-s-u-m-e. Never assume.

Lesson #2: Keep raising goals because kiddos just might surprise you and rise up to meet them. Listen to you…no one knows your kiddo like you do and if the powers that be can’t initially see it, keep working at it because there is nothing more regretful that opportunities not seized.